The Rising Tide Lifts all Boats
EHC is pleased to announce the publication of the Procurement of Affordable Replacement Therapies – Network of European Relevant Stakeholders (PARTNERS) programme progress report, year 1 (2018). A real partnership initiative, this programme is an innovative approach to the sustainable procurement of treatment products for haemophilia A and haemophilia B in select countries meeting EHC specified criteria and located both inside and outside of the European Union.
Download the report.
About PARTNERS
PARTNERS is a bold and visionary programme. Its ambition is to incentivize, enable and sustain better national haemophilia decision-making systems by changing relationship systems and creating new channels towards joint decision-making.
About this report
In this one-year report, we capture the progress-made to-date with a data visualization tool of moving water to illustrate the gulf that needs to be filled between where PARTNERS countries begin, where they need to go1 2, and how PARTNERS is working to get them there. To put this into context, the national allotted amount for a child (<18) with haemophilia in a PARTNERS phase 1 country for one year is equivalent to what an infant (0-4) in a Western European countries might use in one month. The visualized water stream(s) also indicates the staged, staggered yet flexible approach in which PARTNERS aims to do this, and illustrates our efforts to build new channels, or redirect existing ones, to raise the national tide that will lift all patients towards European standards of treatment and care.
Achievements to-date
One year in, the greatest success of PARTNERS is the mind-shift that it created. This allowed us to establish dialogue and build relationships (and some trust) in all phase 1 and 2 countries. We report a behavioural shift in most phase 1 and 2 countries, with high willingness to innovate and new relationship channels being opened or existing ones improved. From these have flowed: patient representatives previously trained by the EHC on economics, tenders and procurement, now putting these skills to use; patient representatives having their first conversations with governments over involvement in national decision-making; patient representatives contributing for the first time to considerations of other criteria in national tenders, not just price; and clinicians being trained on planning for better treatment. We have also seen down-stream effects, triggering the possibility of reviewing national treatment guidelines, establishing national registries, building ‘track and trace systems’ and ensuring better continuity of supply. There is much work ahead, but with the pull of a strong, foundational current, we head into year two confident that: The patient whom we met this year in a PARTNERS phase 2 country, who went to the hospital with a headache and slipped into a coma because the country was not currently in a procurement cycle, might be the last patient we lose in Europe to red tape and bad planning.
For additional information, contact EHC PARTNERS Project Consultant Declan Noone [email protected]
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
